Sunday, March 29, 2009

Per the prompt for next week’s Grand Rounds, I’ve been thinking a lot about medical errors and what they do to the relationship between patients and healthcare providers.

Fortunately, I’ve never been involved in the type of medical errors that make the news, like wrong-side surgeries, items left in body cavities after surgery, lethal doses of the wrong medicine, etc. Thankfully, no one in my life has ever experienced anything of this magnitude either. But for every major crack in the system that makes the news, there are many tiny fissures that chip away at its integrity.

In my 28 years of patienthood, I’ve collected my fair share of mishaps and errors: The time I was forgotten about for 20 minutes after a barium swallow test, suspended in the air with my oxygen out of reach several feet away. The time that I was transported to radiology for someone else’s head CT scan, despite repeated protests that my lungs were the problem. The time I woke up during lung surgery (in the recovery unit I’d hoped that horrifying feeling had been a dream. It wasn’t), or the time a loved one was woken up and ordered to take pain medicine that wasn’t hers. I’ll leave delayed diagnoses and altogether wrong diagnoses for another day, because they are more nuanced, less obviously categorized, and especially in the case of delayed diagnoses, less split along lines of culpability.

(And of course there are the minor infringements and indignities: The blood draws that take 3 different techs and leave 8-10 bruises. The CT scans that aren’t where they are supposed to be for pick-up, or the mix-up with test results. Vials of blood dropped on the floor, cultures whose results get lost somewhere in translation, paperwork that is not filled out correctly, bills that belong to other patients that end up on my account…)

Though it relies so heavily on science, medicine is a profoundly human institution, never more so than in those moments when things go wrong. And like most human interactions when things go awry, the reasons usually include pure unintentional accident (who hasn’t pressed the wrong button, misplaced a slip of paper, etc), basic incompetence (there is a learning curve to everything), and what I think are definitely more damaging to the relationship, indifference and pride.

Personally, I am less interested in dissecting what can go wrong than focusing on what to do when it happens. In the macro sense, this could include improved safety protocols (like the checklist before surgeries) and other institutional safeguards. But I’m coming at this from the patient perspective, so I will leave those discussions to others.

No, what I am talking about are the more immediate reactions, how we treat each other when things don’t go as planned. Mistakes will happen but the mistakes themselves are not usually what bother me or stick with me, it’s the way they were handled.

(I recognize, of course, that it is because I have never experienced a major, life-threatening medical error that I can focus on this aspect of things.)

For example, in the wrong CT scan scenario I mentioned earlier, I received two very different responses. The person doing the scan became angry when I repeatedly told her I did not need a brain scan (as forcefully as someone in respiratory distress could), and became angrier when the same thing was told to her from someone higher up in authority. A vulnerable situation—not being able to breathe has a way of making you feel powerless—was made even more so by the fact that my voice was repeatedly ignored.

But moments later, the attending doctor apologized, told me he’d make sure the “patient has altered mental status” comment would be erased from my medical record, and checked in with me later to confirm with me the correction had been made and to apologize again. That’s what I needed—a simple apology and more than that, assurance that the mess had been cleaned up. In the exchange itself, what I needed was a few seconds of listening, an extra minute to confirm my patient ID, or basic recognition that someone who is visibly not breathing well might be onto something when she says it’s her lungs that need checking. I needed to be treated as a person, not a nuisance and not as someone who has absolutely no knowledge or insight into my own body.

If the mix-up had ended when I first got to the room (the transport orderly stared at my ID bracelet for a long time and somehow declared I was the right patient and that the number matched the brain scan patient’s) I would not have cared. After all, mistakes happen, especially in a busy ER. My ID would have been confirmed, I would have gone to get the imaging I needed for my own care, and the patient with the brain tumor would not be wandering around the hospital. It could have been cleared up in a couple of minutes.

But that’s the difference between accidents (reading the wrong number) and events that are the result of indifference or pride. Generally I try to laugh off some of these mishaps; after all, they make a good story and after all, everyone makes mistakes. However, what makes me angry or makes me resentful are the times when the errors are somehow shifted back to me. Whether it’s a doctor, nurse or lab tech doing that to a patient, a teacher doing that to a student, or a boss doing that to an employee (notice the trend here that skews towards issues of balance of power and authority?), it doesn’t make it right and it always damages the relationship.

It’s the same with smaller things like not getting my test results because my blood vials were dropped on the floor, or my name was entered in wrong, or the person who needed to submit form X did not do so. Just let me know and take steps to fix it and I’m on board with you; don’t get irritated with me that you now need to do more work, don’t act like I am an inconvenience to you when I am the one who needs to re-schedule work to come back in for the same tests I just had the day before because of your mistake.

Like every interaction, there are two sides and two avenues for conduct. The way I respond inevitably impacts how the situation resolves itself, too. I can accept the apology or not; I can be calm and reasonable or not; I can differentiate between an unintentional mistake and arrogance or indifference or not. These are distinctions I hope to receive when I make mistakes and errors that impact those around me (students, clients, etc).

Every profession, every interaction between people presents an opportunity for errors. Obviously the stakes are usually much greater when it comes to medical errors, but the basic rules apply nonetheless: Treat people with dignity and respect. Focus on fixing the problem appropriately and moving forward. Be forthright. Sometimes the hardest thing to do is simply say “I’m sorry.” Yet for (non life-threatening) errors, those two words can mean the difference between a blip on the proverbial radar screen and an event that damages trust and fosters resentment.

Monday, March 23, 2009

“I don’t like your body language. You’re not yourself,” was the first thing my doctor said as he entered the room. I was slumped in my chair, and I didn’t need a mirror to know I was pale and my eyes were ringed with dark circles. I did not jump up to greet him like I normally do, and I did not talk quickly or with animation like I normally do. Also, I did not contradict him; I didn’t like my body language, either.

(Apparently, this is what six months of virtually continuous infections will do to a patient’s posture.)

“What’s on your mind? You’re not yourself,” my husband said to me one night as I closed my laptop and stared listlessly at the television, trying to ignore the clutter of the “sick camp” that had taken over our living room: nebulizer and pill bottles fighting for space with stacks of research books, student papers, and half-empty mugs of tea. I was tired of typing while lying down.

(Apparently, this is what six months of virtually continuous infections will do to the coffee table.)

“Are you sure you’re alright today? You’re just not yourself,” my mother said to me in a quiet corner of an otherwise crowded baby shower. She delicately inquired if I was wearing any blush (hint: you need some) and pointed towards the table where I could sit. As I made my way across the room, more than one surprised person said to me: “Oh wow, you’re here. You never make it to showers or events.”

(Apparently, this is what six months of virtually continuous infections will do to my ability to be reliable.)

I do not have direct confirmation from the students I fear I have been short with, the clients and many others still waiting for responses from me somewhere out there in cyberspace, or the friends whose calls I’ve missed or plans I’ve cancelled, but I’m willing to bet they’d agree with this assessment that I am not myself.

Not to get all meta on you, but even here on this blog I feel as though my voice has been slightly off; more cursory and more willing to point you to other places for interesting material rather than being a destination for the discussion itself.

Now, as a general rule I find the term “not myself” a bit vague and useless—how can I be anything other than myself? But the point is well taken; I am not acting as I normally do (or talking, sitting, thinking, and basically getting through the day as I normally do.) I admit it.

For one, I am fragmented. This is something I hear from so many people right now, and I’ve noticed it on several blogs the past few weeks—people taking a break from blogging, or taking a break from commenting and reading, or disconnecting from everything for a bit because there is too much going on. Seems like so many people are taking on more projects and extra work with less time and energy to do it all.

In my world, the freelance deadlines, the huge research project, the class prep and essay grading, the student e-mails (and phone calls!) late at night and early in the morning, the presentations and speaking engagements, and the many other things constantly piling up equal working seven days a week. But I know that while the work details themselves may be different for others, the end result is the same: we’re all being pulled in several different directions.

Usually, though, I thrive on this kind of juggling. This is how it’s always been, and I’ve always thought of it as multi-tasking, not being fragmented.

So what’s different? I just haven’t had the energy to fully engage in most of the things I need to do. “It takes so much energy to simply get through the day and get home that there’s nothing left for anything else,” I told my husband.

I’ve been blaming it all on the long winter here in Boston, sort of joking when I do. But it’s the truth—no winter is ever good for me, but the months from September through right now have been an unusually bad few months. Nothing exotic or hugely interesting, which is why I’ve been hesitant to write about it much, just one infection after another after another after another. Ad infinitum, it seems. In almost seven months, I’ve gone a whopping nine days between infections.

(I’m tempted to say I have the immune system of a gnat right now, but knowing little about gnats, I’m worried that may not be as helpful an analogy as I’d hoped.)

Again, none of this is unexpected in people like me; for whatever reason, this year has just been more virulent. (Ha! Pun somewhat intended). And it took me several months to see for myself how much of my energy was diverted away from other things in my life and consumed by fighting off infections.

So maybe it’s not that I’m fragmented so much as I am currently doing too many things for the altered supply of stamina I have.

Or am I splitting hairs here?

Anyway, I think things are turning around (ignoring the 30-degree weather today, of course). I’m starting to feel better, and my doctor and I have an official plan to try and get me through the next few months. Oh, how I do love me a good plan. I am encouraged by this, and I am confident I can get past the nine-day mark soon. I am not as stressed by the pile of things to do because I’m actually able to chip away it.

And winter? It’s officially over. Now I just need the lungs to get the memo, and we’re all good.

I’m back.

(Apparently, this is what two virtually continuous days of feeling okay will do for a soul.)

Wednesday, March 18, 2009

I took a quiz in the NYT’s Well blog recently and my results were a mix of healthy and innovative, meaning I like to experiment and rarely use recipes, I enjoy using fresh ingredients and spices, and I rely a lot on fresh vegetables and healthier proteins. The point of the post was to discuss how strong an influence the person who buys and prepares food has over household consumption, which I find interesting as well as totally logical.

(I should add here that several days into a lingering stomach flu, I am taking a huge leap writing and even thinking about food. Pedialyte and tea is more my speed right now.)

Anyway, in my more normal solid food state, we have a team approach to buying and preparing food because we both enjoy cooking and we each have complementary goals: I want lots of greens, lots of fiber, and a lot of heat; my husband is especially particular about preparing quality proteins and is always looking to try new preparation methods and new combinations.

Our meal planning has evolved a lot since we first met and started cooking gluten-free; since then, I’ve eliminated dairy and gotten a lot more adventurous, and we’ve both become committed to eliminating processed food. If I think about that in terms of the article on cooking styles, I’d say we’ve both influenced each other’s meals, though in different ways.

I realized our overall grocery store expedition can be boiled down to “Lean proteins, preferable whatever’s on sale, and vegetables.” In addition to lots of herbs and spices, we have lots of vegetable and chicken stock on hand, as well as bulk quantities of quinoa, brown rice, polenta, and risotto. As long as there’s some olive oil and garlic in the house, we’re set for the week and can do many different things with these core ingredients. (Of course we buy other things to supplement breakfast and lunch, but this is the crux of it.)

I found myself telling one of my doctors this last week after a strategy session to map out a way to control my dubious immune system and lungs these days. He was very interested.

“Do you notice you feel better when you eat certain things and worse when you eat others?” (Keep in mind, “feel better” in a lung doctor’s office means, “How is your breathing?”)

I mentioned that I gave up dairy voluntarily to cut down on mucus congestion and that I could tell it made a difference on the very rare occasions I’ve eaten it since: I am much more wheezy, and I cough a lot more. But beyond that, I haven’t really thought about how specific foods may or may not influence inflammation in my airways. I’ve been so focused on the macro—put good things into your body, and hopefully good things will happen.

So my new challenge is to be a more conscious eater, to slow down and think about how I feel and how I am breathing after different meals. It takes time and effort to eat gluten-free, whole foods and keep it economical; if I can parse out added benefit for my lungs themselves, then that’s great.

What about you? Have you noticed you react differently to certain foods (excluding any food allergies/intolerances, of course)? And if you take the quiz, don’t hesitate to share what your cooking personality is!

* * *

In other health-related news, I’ve written before about the effort America’s Agenda Health Care Summit Conversations is making to bring consensus to health care reform. Now, there’s a way you can participate in the movement as well. They are sponsoring a virtual marchto let Congress know how health care costs affect your daily life. You can join the Facebook page, send a photo of yourself, and tell your story. We can’t all be in Washington, but this is one way to get your voice heard. Check it out!

Thursday, March 12, 2009

It’s been a week of just-getting-by here at A Chronic Dose, but there’s much to report from different corners of the Internet.

My colleague and diabetes blogger extraordinaire Amy Tenderich of DiabetesMine recently announced a contest that proves yet again why her site is one of the most respected and influential around:

The 2009 DiabetesMine™ Design Challenge, an online competition to encourage creative new tools for improving life with diabetes.

It’s pretty simple—if you have a great idea for a new web application or innovative new medical device to help manage diabetes, you could win a grand prize of $10,000 to help make your project a reality.

According to Amy’s site, “The contest is open for submissions from March 2, 2009, to May 1st, 2009, at 11:59 pm Pacific time. Winners will be announced on Monday, May 18th, 2009.Submissions are accepted in the form of a 2-minute video to be uploaded to the DiabetesMine YouTube channel, or a 2-3 page written “elevator pitch” plus supporting graphics, also to be uploaded online.”

For more information on rules, other prizes, and judging criteria, be sure to check out the design contect page at DiabetesMine.

As Amy says, let the innovation begin!

* * *

Speaking of innovation, Alexandra Carmichael of Cure Together just announced the release of the first crowdsourced book on endometriosis. Endometriosis Heroes: 137 Women Share Their Experiences and Treatments is available here.

March is Endometriosis Awareness Month, and sites like Cure Together and Jeanne’s Endo Blog (and many others) are working tirelessly to promote understanding and awareness.

* * *

And lastly, innovation of another kind—an unusual perspective in today’s climate of economic woes, layoffs, and general anxiety. One of my all-time favorite voices and people in the medical community is Paul Levy, CEO of Beth Israel Deaconess Medical Center here in Boston and blogger at Running a Hospital. Check out this Boston Globe column about the way Levy has approached potential layoffs at the hospital, and the amazing response from his BIDMC community. Empathy and sacrifice have replaced self-preservation at the other people’s expense, and it’s something we can all learn from, especially these days.

Sunday, March 08, 2009

Today was a much-needed break in Boston—the sun was shining, the snow was melting, and from my perch in sick bay, it was possible to believe this long, punishing winter has an end in sight. October-May are a total wash for me typically, and with DST this weekend, suddenly June doesn’t seem so far away.

I’m sick of being cold and sick there’s not much else say about it, and I’ve had enough writing about health and health care reform for at least a few days, so we’re taking a spring break and talking writing and mentors today.

I read Penelope Trunk’s blog, Brazen Careerist, regularly. From advice on job interviews to musings about gender in the workplace to things I’d never know about venture capital and start-ups otherwise, her material is always informative and usually very entertaining as well. (I love some snark when it’s combined with authenticity and intelligence.)

Anyway, one of her recent posts was about finding a good mentor—in fact, it is called “Get Your Next Mentor By Being Slightly Annoying.” I read this post a day after I’d given a presentation on publishing and social media to nonfiction students in Emerson College’s MFA program. The timing was uncanny, because one of the things I told the students was to be “politely persistent,” to have the confidence to follow up several times and to keep putting yourself out there no matter how many rejections you get. Whether it’s trying to nail down a mentor, as in Trunk’s case, finding an agent, or landing a piece in a big-name glossy, I think the premise remains the same.

(As an aside, here’s a more extreme example of “polite persistence”: I was wait-listed for a competitive program I fully believed I deserved to be in. What can I say? I was young, and suffered from a mix of naiveté and hubris. Every other Monday for the three months in between the wait list notification and the time the letters of acceptance went out, I mailed the dean of admissions a letter that talked about what I believed I’d gain from the program and what I hoped to contribute, and included new published materials each time. I got in, and joked they were simply tired of seeing my return address.)

But the blog post made me think about things beyond matters of persistence—namely, the importance and value of mentors.

I thought about my high school journalism advisor, who sacrificed countless evenings and weekends to help us put out the paper. But she did so much more than that for me. She exposed me to writing conferences and competitions that gave me confidence and concrete goals. Above all, she helped me find a voice—an identity, really—in a world often dominated by my illnesses. Finally, I had a constant. A decade later, few people have had more of an impact on my life and my choices.

I thought about my college journalism professor, who encouraged me to apply for the internship at a national newspaper and quite literally brought issues of ethics, morals and professionalism to our class through her personal experiences (she knew Woodward and Bernstein) and the dynamic speakers she arranged. It was her true passion for what she did that most influential; not many people I know are as deeply committed to and energized by their careers than she is. I didn’t want to disappoint her.

That’s what great mentors do, I think; they challenge us to be better people and better professionals by virtue of their own accomplishments and their integrity. It’s more than simply teaching us skills or dispensing advice.

I am lucky that in this latest stage in my life I continue to have incredible mentors, like the cousin who reads every draft of every major project I do, who taught me the language of grant-writing and research proposals and whose perspective has informed my work in so many ways, or the agent who does much more than negotiates contracts and submits my work but invests himself fully in my ideas and advocates for them.

We talked about the “hidden curriculum” of medicine in my classes this semester, the knowledge learned in hallways and during anecdotal exchanges—lessons that do not occur in the traditional med school classroom. Part of the discussion involved those role models who may not even be even aware they are serving that function. Now more than ever I recognize how many people like that are in my world—what may be just a link or an introduction or a passing idea on their part opens up a whole new avenue of possibilities. For someone like me who is still learning and expanding what I do, that hour-long lunch, that really wonderful phone call, or that amazing talk really can have a lasting impact, and plays a part in the choices I make and the goals I strive for long after the fact.

Long story short: Yes, persistence is a huge component of success in any field, but having people who are willing to share their time and expertise is, I’d argue, just as valuable. For as long as you keep evolving personally and professionally, I think you never outgrow the value of a mentor.

Tuesday, March 03, 2009

There’s been a lot of talk about the economic stimulus plan, comparative effectiveness and health care reform lately. And with good reason—health care reform is integral for our physical as well as our fiscal health.

But in today’s Well column, Tara Parker-Pope raises an important point: in all this talk of methods and outcomes, where is the doctor-patient relationship?

The column touches on a core critique of our medical system, one that right now is better equipped for acute care then prevention and wellness. Specifically, it explores our propensity to want prescriptions that might be unnecessary, or to favor newer or more expensive treatments or procedures when older or less expensive ones might suffice:

What I find interesting about this column is that it doesn’t posit the blame on just the patients who ask for drugs or the doctors who write the scripts—rather, it points towards the need for both parties to work together to achieve the best outcome.

I’ve written a lot about the doctor-patient relationship, and while I have much more to say about this particular manifestation, I can’t help but feel so much remains true—in the end, mutual trust and respect is fundamental to a healthy relationship and thus a healthier outcome.

The medical education our providers have and the experiential wisdom we have about our own bodies are not at odds with each other. If we combine them and ask the right questions of each other, hopefully we can filter out the unnecessary treatments and tests.